Wednesday, June 18, 2014

Debate - Westminster : Organ Donation

Glyn Davies:

Thank you, Mr Hollobone, for calling me to speak in this important debate on an issue that has long been a strong interest of mine. I congratulate my hon. Friend the Member for Burton (Andrew Griffiths) on securing the debate, and on the reasoned and comprehensive way in which he presented his case. I apologise to him and to you, Mr Hollobone; I did not notice that this debate was taking place until about five minutes before it started, so I must apologise if my comments are in any way disjointed.

Donating an organ is just about the greatest gift that anybody can make. It is wonderful to do so on death, but it is perhaps even more so in life, such as when people donate kidneys altruistically. I know several people who have done so, and it is one of the greatest things that anyone can do. Today is a particularly good day to discuss organ donation; the night before last, we watched Erik Compton, who has had two heart transplants, come second in the US Open golf championship. It demonstrates how a transplant can not only give life but can allow the recipient to live a life that is completely full and to do the most amazing things. Coming second in the US Open is a pretty amazing thing to have done.

My own interest started with a woman I knew, Trudy, who was a constituent, although I was not her MP at the time. She had one of the first heart and lung transplants at Papworth. She was a most amazing person. Together, we worked to deliver kidney dialysis in Montgomeryshire, where there was none. A dialysis unit has now been delivered by the Welsh a Government, and is delivering a terrific service. Trudy died a couple of years ago, but the dialysis unit stands as a monument to the fantastic woman that she was.

I am a trustee of the Kidney Wales Foundation. One of the disappointments in my public life is that I am in disagreement with the foundation about changing the organ donation system to one based on presumed consent. I am the only trustee who takes this view. I disagree completely with what the Welsh Government has done in changing the law to introduce presumed consent. I have always been a bit disappointed by this disagreement. The aim of every trustee—me and all the others, despite the disagreement-is to increase the number of organ donations and the number of organs available. I have always been driven by the evidence. I have never been influenced by the ethical aspects of this debatede. I am influenced only by where the evidence takes me in terms of how to deliver the most organs. I firmly believe that what the Welsh Government have done will absolutely not deliver more organs, despite what Welsh Ministers say, and which the media repeats, parrot fashion, without looking at the evidence.

The only time I ever feel resentful in this sensitive debate is when, as has so often happened on the numerous times I have been invited to speak about this issue in the media, somebody in desperate need of a new organ is interviewed and I am then asked why I want to prevent them from having an organ. I am utterly appalled by the media’s lack of objectivity and the lack of reference to evidence when dealing with the issue.

We need to move forward as best we can and I want to focus on policy for the future. I will make some specific points. We must look at what happened in Spain. Spain has been referred to in this debate on several occasions and it is a huge success story. However, it is often incorrectly referred to as a country that operates an opt-out system. That claim is absolutely false, even if the Welsh Government used it as part of the basis for their argument. Despite experts writing to them to tell them that their claim is false, it is still what they based their consultation on. It was a disgrace to conduct a consultation on those misleading terms.

What happened in Spain was that opt-out legislation was introduced in 1979. Twelve months later, it was pretty well abandoned. It remains on the statute book, but as sometimes happens to laws, it has never been implemented. Ten years later the Spanish Government realised that the legislation was not working and introduced a series of other changes. It was these changes that we should replicate and concentrate on if we are to make a difference.

We should also learn lessons from the organ donation taskforce, which my hon. Friend referred to several times. It did a terrific job under its great chair, Elizabeth Buggins, who is one of the most expert people on this issue. The taskforce considered the issue for two or three years. Everyone assumed that the taskforce would recommend a change to presumed consent. However, when it produced a report, all its members had changed their minds because they had looked at the evidence. The person who has taken over from me in Montgomeryshire as the driving force locally behind promoting renal dialysis believed that changing to presumed consent was a right way forward. I said, “Look at the evidence.” As soon as she studied that evidence, she changed her mind.

Andrew Griffiths: I thank my hon. Friend not only for attending the debate, but for making such an important and heartfelt contribution; I think that we all value that. I understand what he is saying about the opt-in system versus the opt-out system and the need to follow the evidence. However, does he agree that ultimately organ donation should be my choice? It should be the individual’s choice as to whether their organs are used for donation after they die, and nobody else’s choice.

Glyn Davies: I thank my hon. Friend for that intervention. It is a perfectly reasonable position to take. I do not know what the figures are—I do not know how often this situation happens. them. I am interested to know because it seems wrong.

I accept the point that has been made, but one counterpoint is that sometimes people can change their minds even though they are carrying an organ donor card. However, if people have joined a campaign, we should assume that that is their view. I would be surprised if there are many instances where a family would overrule an individual’s decision; it would be interesting if the Minister could give us the figures to show how often that happens. If it is a major issue, we should address it.

The first issue that we need to address is the number of specialist nurses for organ donation. That is what made a huge difference in Spain, and it is the area where we really need to concentrate. That is what has made a big difference here already Since the organ donation taskforce reported in 2007, the number of donations has increased by 50%, which was the target. That is good news. It is the specialist nurses who have made the difference.

I spent some time talking to a SNOD (specialist nurse) in Shropshire. He has agreed to visit local schools and to organise discussions and debates. We can use specialist nurses to help people to understand this debate, which for most people only becomes an issue when they are faced with what is often a personal tragedy and is such a difficult time to talk to people. Talking to people when the person who perhaps they love most looks as if they are alive, because their bodies are still breathing, even though they are brain-dead, and saying that that person’s support system should be switched off and their organs taken is a hugely traumatic experience. We need trained nurses who have the skills to communicate with people in those difficult circumstances. It is the specialist nurses for organ donation who can do that.

Andrew Griffiths: Four out of 10 families refuse consent when they are asked to give it.

Glyn Davies: I think that that is a repetition of the previous intervention. However, the point is interesting and I would like the Minister to give us the figures to show to what extent that situation actually happens, and whether a specialist nurse in organ donation was involved in individual cases.

The second thing that is crucial, particularly in Wales, is the number of intensive care beds. A lot of people assume that an organ can be donated when there is a road accident or when somebody is suddenly killed in another way, but there can only be a donation when the person is in an intensive care bed and there is the facility to carry out the donation. We have a shortage of intensive care beds. The number of such beds in Spain is higher than in the UK, and much higher than the number in Wales, where it is particularly low. That is the area where the investment needs to go to ensure that there are intensive care beds. I know that in the last year there have been cases in Wales of organs that were available for donation but they were simply not used because there was not an intensive care bed to allow the donation to happen.

The final point I want to make is, I think, the reason why my hon. Friend the Member for Burton secured this debate today. It is about the issue of awareness. We should put every effort we can into campaigns to have everybody tell their next of kin their view on donation. That is what I say to people in schools when I talk to them; I say to people, “Tell your family what your view is, so that they know clearly.” Carrying an organ donation card is helpful in that respect, because it very much gives an indication of someone’s view. That is why I was interested in the point that my hon. Friend has made in his interventions on me.

What we really need, and the Government really must invest in it, is a big advertising campaign based on the message, “Tell the family. Make sure your next of kin know your wishes.” If we had such a campaign, we would raise the number of consenting next of kin. If we can increase the number of people in Britain who consent to organ donation to the level it is in Spain, we will not have the thousands of people dying on a waiting list as happens in the UK at present.